Methotrexate update

Just a quick post update on the methotrexate. Obviously it’s way too early to know if it’s doing anything at all for the underlying illness. I’m only three weeks in after all. But so far, it does not seem to be disagreeing with me – in that the most common symptom that people have reported (nausea and sickness) isn’t something that I’ve had too badly at all. I’m surprised by this as I’d almost expected it to be terrible, as lots of people I know have said it was for them, but in fact, it has been quite mild, and definitely bearable. The rheumatology nurse said that if I hadn’t experienced it by now (that I’m on the full dose), then I would be unlikely to. So hoorah!

I also learned from the rheumatology nurse that echinacea is not recommended for people with auto-immune disorders, and she advised against taking it. It’s a herbal remedy used to strengthen the immune system and I usually take it at the first sign of a cold or virus, particularly during the winter. I guess that the reason is that if it works, it may provoke a flare up or something. I hadn’t particularly noticed whether it did or not, as actually when I am ill, I often am flare free (body’s too busy fighting virus to fight itself?). It’s worth knowing though, so I will see how I go this winter without taking it.

If that’s the advice, then it must mean that someone somewhere believes that echinacea DOES work to strengthen the immune system, so perhaps that’s good to know for everyone without an auto-immune condition!

 

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5 responses to “Methotrexate update

  1. Excellent news, and it’s so good to see a post about MTX not causing a problem! I’ve been fine with it for years and it keeps my RA mostly under control. I’ve also noticed that when I have some other illness my RA tends not to be a problem. Could be coincidental but it is interesting. Hope the MTX does the trick for you!

  2. That’s wonderful! I was diagnosed with PR two years ago, the flares became so frequent and parallel that it is now an RA diagnosis. My doctor had me on methotrexate (15 mg once per week) and it definitely reduced my flares at first but after a few months they started to come back. He put me on Humira (an injection every two weeks) and reduced the methotrexate to 10 mg. That did the trick. I feel great! And except for a sore knee or hand once in awhile I am flare free. The only side affect I experienced from the methotrexate was hair loss, but once my dosage was reduced that went away. Good luck!

  3. Hi there, I just came across your blog. Great to hear your stories as so similar to mine. I’ve had PR for 7 years now. I get a flare up almost every day, but not always severe, and so far I’ve managed it with ibuprofen (though some days this doesn’t help at all). Just wondering at what point you started the plaquenil, and have you heard of many people having side effects from this? I’m scared of starting the drugs, but I’m also scared of this turning into RA at some point, as I’m very high in anti-ccp so know that I’m susceptible. And last question relates to gluten free – I’ve never been able to work out the triggers, whether I eat foods with gluten or without, the flares come on. After how long on gluten-free did you see an improvement? Do you know if this helps everyone? Thanks for your advice… Lesley from Sydney

    • Hi Lesley, thanks for your comments and questions. I started plaquenil within twelve months of being diagnosed. in the first year my flares were really really bad and debilitating. My hands were often so swollen and stiff that I could not use them, and the shoulder flares had me screaming in agony. There was no way I could continue on with no treatment, so I started about 12 months after my first signs of PR. I haven’t had side effects of plaquinel. Some people do, and some don’t – as it is with most drugs, but I think overall it’s pretty safe.
      High anti-CCP does make it more likely that you’d develop RA at some point, so it might be worth starting I guess for that reason.
      Generally, I don’t know exactly what triggers a flare. But when I gave up gluten, i was completely flare free for a few months – it was very startling as before then I was flaring mildly most days and had persistant pain in two joints for a few months! My energy was also really high – much higher than normal. I hadn’t pinpointed it as a trigger before that. I’ve only had gluten a few times since then and I noticed how fatigued it made me feel afterwards, and it did seem to precede a mild flare. Even though I no longer have gluten, I still flare, so even if it was a trigger, it wasn’t the only one.
      And no, going gluten free doesn’t help everyone as far as I know! that’s one of the main problems with Pr is how different each person seems to be. While we share lots of things, there isn’t one thing that works for everyone. If only there was!
      The facebook group is very useful with lots of people posting questions and supporting each other. You can also really see how different our experiences of PR can be.
      Good luck!

      • Thank you so much Ruth for your quick response. So good to hear about other people’s experience, as I don’t know anyone with the same thing, and you’re right, often even the doctors haven’t heard of it. I’ll definitely get onto your Facebook page. Thanks again. 🙂

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